How Can Parents Know What Is Already Mapped From What Is Uncharted

1. How Can Parents Know What Is Already Mapped From What Is Uncharted Walter H. Kaye MD Professor of Psychiatry Director, Eating Disorder Treatment and Research Program University of California San Diego Eatingdisorders.UCSD.EDU wkaye@ucsd.edu

2. Overview • Science and evaluation of treatment • But very limited evidence-based treatment • Standards of care – is this possible? • Data critical to making informed decisions • Complicated, many points of view • Consensus needed • UCSD treatment as a model • Worthwhile – gradually raise level of care

4. Coronary Heart Disease • Understanding of biology • Measures of extent of disease • Blood flow in heart arteries • Many replicated studies comparing various forms of treatment • Meds, stent, by-pass • Comparison of long-term outcome • Years after intervention • Some relationship to insurance coverage • Guidelines and training

7. Eating Disorders • Limited understanding or agreement on cause • Behavioral assessments but no objective measures of underlying brain mechanisms • Few treatment studies • Reduce symptoms, improve outcome • No cures or reversal of temperament • Little long-term outcome data • Limited guidelines, training

9. How Do You Know What Is Effective? • Vague claims and personal opinion • Trust me – this works • Of course we offer “XX” therapy • Outcome data • Done at discharge • Not published in a reputable journal

10. Scientific Method • Incremental advances • What do we know • What don’t we know • Rigorous Study (avoid bias) • Comparison of matched groups, large number of subjects • Reliable meaningful measures of response • Statistics – probability it is true • P =.05 1 in 20 possibility occur by chance • Publication in scientific journal • Peer review, Impact factor • REPLICATION,REPLICATION,REPLICATION

11. Recent Controlled AN Treatment Trials Pike (NY; 03), 33 adult AN CBT vs. nutritional counseling, OP, 1 year Good outcome: CBT (44%) > nutrit coun (7%) Drop out/relapse: CBT (22%) < nutrit coun (73%) Halmi (NY, CA, MN; 05), 122 adult AN CBT vs. fluoxetine vs. combination, 1 year Overall dropout rate of 46% No difference between groups in survival in treatment McIntosh (New Zealand; 05), 56 adult AN CBT vs. IPT vs. nonspecific clinical management, 20 weeks 70% did not complete or made small/no gains Nonspecific better than CBT or IPT Gowers (England; 07), 167 adolescent AN IP ED vs. OP ED vs. general adolescent services, 2 yr No differences in outcome between groups Full recovery in only 33% at 2 years

12. Multiple Studies Show Family Based (Maudsley) Treatment is Effective for Adolescent AN Russell et al (1987)—90% improvement in subgroup of with short-duration AN Le Grange et al (1992)—70% improvement Eisler et al (1997)—five year follow-up on Russell et al (1987) found improvements were maintained. Robin et al (1999)—90% improvement with family treatment compared to 65% with individual therapy Eisler et al (2000)—65% improvement in cohort Lock et al (2010) – superior to individual therapy at 1 year follow-up

13. How Do You Evaluate A Treatment Facility or Therapist? • Easy to claim expertise and good outcome • No standards or enforcement of performance

14. What Do We Know? • Genetics, Biology, and Temperament • Perfectionism, achievement drive, anxiety, OC, etc • Powerful brain processes, but not well understood • Natural course of the illness • 50 to 70% recovered by mid 20’s • Few evidence based treatments: Maudsley, CBT, DBT, IPT, medication • Improve symptoms and outcome • Not cure or reversal of temperament • Challenge: Adult AN, Impulsive BN

15. Can Science Be Translated Into Real Life Treatment? • Do programs adopt this new knowledge? • Are therapists thoroughly trained, certified • Do they/would they use evidence based treatments? • Do programs prove their approach results in better sustained outcomes? • What about treatments not based on any valid evidence or theories? • Educated consumer approach? • Long term evolution

16. Evaluating TreatmentLooking Beyond The Buzzwords • Who does the direct care of patients • Time, expertise, substance • Full time vs.parttime staffing • Communication, consistency • Are staff identified on web-site, etc. • Credentials, experience • Who is responsible • What is their ED expertise • Can they be contacted

17. Evaluating Therapy And Therapists • Few evidence based treatments or training • Thus staff competence, experience crucial • Warm, empathic, caring essential • What is their training/degrees • Bachelor, masters, PhD • Professional vs. APA accredited • Time spent in direct patient care • What is the staff/patient ratio in groups • How is staff trained and supervised • Who is in charge, how is this done • Do they recognize anxiety, depression, etc

18. Other Treatment Ingredients • Full time psychiatrist, medical coverage • Full time dietician and nutritional approach • Rate of weight gain • Binge purge behaviors • Individual, family expertise and availability • Do they publish, present, do research

19. Re-entry Into The Real World • Have patients learned to cope in the real world • Have they learned constructive strategies • Manage anxiety, OCD, etc. • What are reasonable progress expectations • Have these been tested • Are significant others involved and prepared

20. Outcome Studies • Compare admission to discharge • Not surprising shows improvement • But is it permanent? • Key - Long term follow up • Show sustained (1 to 2+ years) improvement • Data – could be supportive of adequate insurance coverage • Meaningful measures and changes

21. UCSD Treatment Model • Goal • Patient care • Develop new treatment approaches • Train therapist • Evidence based (FBT, CBT, DBT) • Constructive skill learning • Based on neurobiology, temperament • Partial programs • Real life applications and preparation for life after discharge, involvement of significant others

22. Training, Patient Care • Priority – Social skills • Expertise – 25 to 30 pt • Skills-based treatments • 7 PhD, 4 Psychiatrist, 5 SW/MS, 2 dieticians, 2 nurses, 2 techs • Training (15+% time) • 2 to 3 hr supervision + as needed • 1 hr lecture • 2 hr treatment team

23. How Can Parents Help Research • Data needed to show what is effective treatment for recovery • How behaviors are wired into the brain • Genetics • Developing better treatments • Outcome studies • Centers of excellence • Autism has been very successful • Congress, NIH, foundations, insurance co

24. ED Treatment References Treatment Comparisons NICE National Institute for Clinical Excellence guidelines for AN and BN (Jan 2004)www.nice.org.uk Treatment Guidelines American Psychiatric Association. (2006) Practice guideline for the treatment of patients with eating disorders, 3rd ed. American Psychiatric Association. Adolescent Medicine, Pediatrics, etc.

25. SUMMARYIf what a program tells you sounds too good to be true, it probably is. • Scientific understanding, evidence basis of treatment evolving • Standards of care needed • Consensus driven (short term) • Data driven (long term) • Rigorous outcome data should be used to define insurance coverage